The informal clinical doctorate survey in the DNA Exchange last summer provided some insight into the genetic counselor viewpoint and provided some results that will be interesting to compare with the formal survey from the Genetic Counseling Advanced Degree Taskforce in December. Thank you to those who participated in our Clinical Doctorate survey. And the results are…

A total of 254 genetic counselors voted:

Masters and then Clinical Doctorate as a later option (Clinical Doctorate as a Terminal Degree): 49.61% (126 votes)

Almost half (49.61%) of voters supported making a Clinical Doctorate in Genetic Counseling available as a later option. A total of 160 voters (63%) supported the option to create a Clinical Doctorate as either a later option or as the only option while 88 voters (34.65%) want to leave the current Masters in Genetic Counseling path as the only path. It was unclear as to what the 6 votes (2.36%) for “other” was since all of those votes were left blank as to what the other options might support.

The small scale survey we did was not a scientific poll, but it does lead us to ponder the options. Why are 160 out of 254 genetic counselors are motivated enough to vote for some version of a clinical doctorate?

One strong theory is professional development: Are we missing out on opportunities due to our degree? Most of us have encountered or have friends who were unable to attend conferences like the Smith meeting, be considered for pharmaceutical clinical science associate positions, be considered for faculty positions at some institutions, or qualify for grants since we do not meet the requirement of having doctorates. We meet every other single requirement for the position, but because doctorates alone hold such a high respect in the medical field, we are being excluded from opportunities. The limitation is simply because the highest degree that we can reach is a Masters degree.

How frustrating to be limited not by ability, but by degree limitations. Genetic counselors are trained in such a way that we can take on different specialties and roles. Our flexible degree allows us to specialize in one tiny section of the genetic world OR broadly cover patients of all ages whether pregnant, affected by a genetic condition, or wondering about the impact of familial cancer. Could an advanced practice clinical doctorate allow us even greater flexibility later in our careers?

One way to address this question is to look at the published literature of many different professions that now have clinical doctorates: pharmacy, audiology, nursing, speech pathologists, occupational therapy, physical therapy, optometry, podiatry, and psychology. There are some great online and peer reviewed articles out that detail the pros and cons of clinical doctorates overall and by discipline. If you are interested, check out the great laundry list of resources that the Physician’s Assistants put together during their decision process http://www.innovationlabs.com/clinical_doctorate_summit/pre/resources.html#4a>

Some key pieces of information. The American Academy of Audiology reports that practitioner incomes are increased since implementation of the clinical doctorate in audiology (AuD). AuD graduates earned 13% more than pre-AuD counterparts did in 2006. (http://www.audiology.org/news/Pages/20081027a.aspx)

Want your information in a slideshow? Review Laura Conway and the GCADT’s slideshow that reviews the literature and has a slide summarizing the long term outcome impact of the clinical doctorates in PT, pharmacy, and audiology including increases in salary, male, and minority applicants. < http://www.nsgc.org/Portals/0/Presentation%20Slides.pdf>.

What do all these resources tell us? They tell us that there is some nice outcomes data about other disciplines and now genetic counselors in all stages of their career need to come together to decide if a Doctorate in Genetic Counseling (DGC) is good for our profession.

Stay tuned for a 3rd post in the Clinical Doctorate Series. We will address GCADTF (Genetic Counselors Advanced Degree Task Force)’s plans to have a decision-making summit in 2013, explore the logistics of getting a clinical doctorate as a later option, and discuss some possible CD course load.

Co-authored by Dawn Laney and Kelly Rogel. Dawn Laney is a genetic counselor, research coordinator, and instructor at Emory University in the Department of Human Genetics. Although she is a child of the computer age and is all for innovation she secretly prefers to use pen and paper to write rough drafts of anything creative. Kelly Rogel is a graduate from Sarah Lawrence College’s Genetic Counseling program and is currently serving as a Peace Corps Volunteer Teacher for the Deaf and HIV/AIDS Educator in Kenya and spends her free time learning more about how genetic services in Kenya can be expanded.

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How often do you find yourself explaining what genetic counselors do? Do you ever feel like no one knows how to categorize your career? The reality is that we are a little bit of everything and accordingly there isn’t a single label that fits us neatly. We are medical professionals, researchers, educators, advocators, and administrators.

As genetic counselors, we are constantly reminded that we don’t fit neatly in a single category which can make our exact role confusing. Academic institutions, private clinics, and medical institution are unsure how to utilize our skills or determine our status. Would an advanced degree focusing on the clinical care of patients allow us to be more clearly “labeled” by institutions so that our knowledge is more respected and sought out?

Genetics is a constantly evolving branch of science. Exciting, game changing scientific discoveries are announced frequently, genetic counseling changes with those discoveries. As part of this evolution, genetic counselors are specializing and seeking out different roles within their institutions. How do we ensure that the genetic counseling profession stays at the cutting-edge of the genetics movement and don’t get left behind?

Many health professions focused on clinical care have acknowledged that their current training may not allow room for future growth of their profession. Nursing, physical therapy, psychology, and pharmacology are a few fields that now offer clinical doctorate degrees.

A clinical doctorate (CD) is an advanced degree that focuses on the clinical care of patients. Individuals with a CD serve in a clinical role in a variety of settings where they provide patient care and patient focused research. Upon the completion of the 3-4 years of post-baccalaureate training, the title “Doctor” can be used in the same sense as a “PhD Doctor.”

There has been an excellent discussion begun among genetic counselors weighting the pros and cons of a clinical doctorate degree for genetic counseling. Some feel there isn’t a need for a higher degree in our profession. Others are concerned about the cost, both financially and time involved. Still others believe a higher degree for our profession would open more doors of opportunities for us and allow us to grow as a profession. A piece of this discussion is available for review and comment on the NSGC clinical doctorate listerv.

For those who haven’t heard much about the topic yet, here’s a brief introduction to the options. If the decision is made to offer a higher degree for our profession there are two different approaches that can be taken: Clinical Doctorate as Terminal Degree or Clinical Doctorate as Entry Level Degree.

Clinical Doctorate as Terminal Degree: All genetic counselors would continue to be trained in a Masters level program with the Masters degree being the entry level degree. Genetic counselors would then be given the option to pursue a clinical doctorate degree in genetic counseling if one desires to do so (a CD would not be mandatory). This would mean that some genetic counselors would have a Masters and some would have a Doctorate.

Clinical Doctorate as Entry Level Degree: The long-term goal would be that over 20 years all genetic counselors would have Clinical Doctorates. This would be a slow process allowing for a smooth, positive, and easy transition from the current Masters degree to Clinical Doctorate degree for our profession.

Thoughts? Concerns? Pros? Cons? We want to hear from you! We will continue this discussion with a follow-up blog post and we want to make this a two-way street exchange between all genetic counselors.

There is great informational PowerPoint presentation available for review at the NSGC website and plenary scheduled at the NSGC Annual Educational Meeting in 2012.

Co-authored by Dawn Laney and Kelly Rogel. Dawn Laney is a genetic counselor, research coordinator, and instructor at Emory University in the Department of Human Genetics. Although she is a child of the computer age and is all for innovation she secretly prefers to use pen and paper to write rough drafts of anything creative. Kelly Rogel is a graduate from Sarah Lawrence College’s Genetic Counseling program and is currently serving as a Peace Corps Volunteer Teacher for the Deaf and HIV/AIDS Educator in Kenya but spends her free time learning more about how genetic services in Kenya can be expanded.

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I have enjoyed the opportunity to be a part of this wonderful blog as an author.

I am leaving for Kenya where I will serve as a Peace Corps Volunteer for 2 years. I will serve as a Deaf Educator at a school for the deaf. I will also be a Behavior Communicator and will work with HIV/AIDS prevention within the deaf/hard-of-hearing community in Kenya.

I will also have a 3rd project which can be anything we want to do. Since genetic counseling is one of my passion I want to make my 3rd project something that has to do with genetic counseling. I would love to hear your input regarding genetic services in different countries and what we can learn from it.

While I am stepping down from this blog as an author, I do hope to continue to blog as a guest providing I have Internet access in Kenya.

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Mandatory newborn screening has made the news several times this month. News articles have touched on the following themes: concerns about privacy and discrimination, unnecessary uncertainty and anxiety, and the constitutional of newborn screening programs.

The Citizen’s Council of Health Care (CCHC) filed a suit against the State of Minnesota and the Minnesota Department of Health on behalf of nine families. Even though lower courts found that newborn screening program does not violate the 2006 state genetic privacy act (Minn. Stat. § 13.386, subds. 1-3) Minnesota’s Supreme Court has agreed to review the case.

Mandatory newborn screening tests can save lives and improve quality of life for children but can also lead to uncertainty for families who receive unclear screening results. A UCLA study refers to this as “the collateral damage of newborn screening.”

**click on each underlined title to read the original news article**

This is a critical period for mandatory newborn screening programs. What are our responsibilities as genetic counselors? How can we improve mandatory newborn screening programs? Should information about newborn screening programs be more readily available? Should there be more support provided during the follow-up period?

I had a recent discussion with friends regarding their thoughts on if miscarriages and stillbirths should be discussed publically.

Friends who announced their pregnancy early felt they had to defend their decision for an early announcement. People kept asking them what they would do if they had a miscarriage. Those friends would reply they chose to announce their pregnancy early so they would have a large circle of support if they were to have a miscarriage.

Does society wants us to look the other way if something “sad” happens? Is it because we want to protect our family and friends from potentially “bad” news? Is it because we don’t know how to react when hearing the news that a close one had a miscarriage or a stillbirth? Is it because it makes us feel helpless?

This discussion bought up the role of social media in our daily life. Sometimes I see Facebook status updates that a friend is pregnant, having contractions, or just had a boy/girl. Every once in a while I see updates that a friend just had a miscarriage.

I have noticed people do not always know how to response when someone posts about having a miscarriage. Some become upset that this was posted and think it should be a 100% private matter.

I have also noticed a couple of friends posting pictures of their stillborn baby. This seems to upset some people who feel something like this should be private and not posted. Is it because people don’t want to deal with the sadder aspect of pregnancy and birth process? Is it because they want to be protected in a sense and only hear the “good” things? Is it because it scares people that this could happen to them? People complain it’s inappropriate and inconsiderate for stillbirth pictures to be posted.

On the other hand, there are people who feel this is a great thing to do in the grieving process. Just because they had a miscarriage or a stillbirth doesn’t mean they were never pregnant. They still want to share their child with the world. They don’t want to hide the baby-parent bond, they don’t want to hide their love, and they don’t want anyone to forget their baby.

This again, comes back to the fact that discussions of miscarriages and stillbirths is considered taboo in our society. Should something that is common and a natural part of human life be hidden? Or should it become more accepted that this is part of life and it’s ok to share it with others?

Personally, I believe people should be able to do what is most appropriate for them without feeling like they have to defend themselves. Some people prefer to be more private while others prefer to be more public. My personal belief is that people usually know what is the best for them in situations like this but there needs to be more support and acceptance from society for people to be able to make that decision.

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Over the years, I have both volunteered and worked as a teacher’s aide in various classrooms. I have several relatives and friends who are special education teachers.

Many children in special education programs have genetic conditions and I am always surprised at how little many teachers know about genetics. This prevents them from understanding how they can work with their students in the best ways. This prevents them from understanding what sort of medical issues each child might have and how to watch for red flags. This also causes miscommunication between parents and teachers.

When I am able to explain what a genetic condition is to a teacher, I see a difference in their teaching approach. They become more accepting and set realistic goals their students can achieve. Those goals are usually set higher.

Teachers continue to see the child for who he/she is and do not allow the genetic condition to define their student. Instead, they have a better understanding why certain behavior or medical issues may arise and are more prepared for those issues. This in turn creates less stress for the student and parents.

This also leads to improved communication between parents and teachers.

Parents enjoy being able to talk openly about concerns to someone who understands and knows their child.

Teachers also have a lot to teach us genetic professionals, I know this from personal experiences.

Should genetic professionals explore ways for making resources about genetics more accessible for teachers? If so, how?